My friend

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Today, God showed himself to me through my dearest friend. I needed her hug. I needed her words. I needed her comfort more than I knew I needed any of those things. When I see her, it feels like home. I get to wear a pair of mismatched socks, a pair of pants I have worn during both pregnancies, and a tee that I usually sleep in. She doesn’t care. She just loves me for who I am. She loves me for where I am. And, most importantly, she loves me for where I am not- what I lack- my insecurities- my life struggles. 
We have been through much together. We have girls who are 10 months apart in age, and they are such sweet friends. 
We catch up, reminisce, and cackle (as our husbands call it) like we are just the funniest people in the world to each other. 
I am so appreciative of this enduring friendship that God has allowed me to have with her. Thank you, Char, for just loving me and knowing when I need you. 
Today was a good day, and I felt joy peeking through the sorrow. 
Wedding 2001

2014
Our girls today. 

Vent

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The heat pushing through the vents is all I hear. The kids have finally gone to sleep; Scott is getting ready for bed, and I am lying here wishing away the last 2 days. Today, especially, opened my eyes to the true grieving process. I am not sure why in heaven’s name I thought I was ok, after only 3 months of knowing (and not knowing) what challenges lie ahead for Samuel- for us. I remember reading a book one of Sam’s therapists gave us about grieving the loss of “what could have been.”  One of the stages of grief listed was anger. I kept telling Scott that I was not angry. I never got angry about any of this- the struggles, the diagnoses, the appointments, the therapy, the delays. I had a supreme type of sadness, yes. But, anger? Nope.  

Until today. 
I woke this morning with sore jaw muscles, as if I had clenched my teeth all night, which is probably exactly what I did. My fingers ached to the bone. Even my scalp hurt. My body was raging. And, it didn’t stop there. I was hurting to the very core of my soul. My innards were as angry as my body felt. The tears started pouring before my feet hit the ground, and I was furious. I didn’t know why, but it felt as though the anguish I was having just spewed from the inside out. 
I could barely walk the stairs to the kitchen. I didn’t want to look or talk to anyone. I just wanted to scream as loud as my voice would carry the sound. Scream until I ran out of voice. Scream for all the what ifs. Scream for all the I don’t knows. Scream at my body for betraying me and giving my child more chromosomal material than he needs- so much more, that it will affect him for the rest of his life. 
In that instant, I hated myself. I couldn’t stand one more minute of me. 
This self-loathing continued throughout this day and into the darkness. This unbearable anger has still not subsided. It is tucked neatly beneath the surface, just enough for me to carry on. 
But, I know now why it is called “the stages of grief.”  I understand now that the stages flow differently for each person. Today, I am angry. 
Tomorrow, maybe I won’t be. Tonight, I will seek the comfort that only He can give, listen to the air flowing, and pray for joy. I miss joy. 

It’s in the genes

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I haven’t written a medical update about Samuel in some time. I have learned that appointments and tests do not have an instant gratification disclosure. These things take time. 

I have, since my early 20’s, when I became more self-aware of my personal flaws and deficiencies, prayed for patience. I feel as though I am somewhat predispositioned to having the “I want the answer now; I need this done now” characteristic, as I am the baby of my parents’ 3 children. We babies like to have it when we want it- attention, love, items, and ANSWERS! We don’t like to wait. This is probably somewhat of a generalization, but my fellow babies understand. 

Having patience is something I have struggled with all of my life. I try to keep it in check by thinking positively and rationally, praying, and just really working to see that God’s timing is best. 
In comparison to many families struggling with an autism diagnosis, we have had to  wait such a short amount of time for concrete diagnoses for our Sam. We live in such a medically advanced and accesible place for excellent care. I give thanks above for that. As much as I am a Louisiana girl living in a Katy world, I am more thankful than I could ever be for being exactly where I am. 

Since September, Samuel has been diagnosed with global developmental delay, hypotonia, and autism. He has had a clear MRI scan, and I have touched on each of these, some more than others, in previous blogs. Our next appointment was to see Dr. Rodriguez downtown.  He is a fabulous geneticist, and we were to wait for the hospital to call for Samuel’s 24 hour EEG to be scheduled. This would determine if he is having any type of seizure activity over an extensive period of time.  His EEG is this Sunday, the 11th, and I am praying for a calm spirit in Sam. It will be a long day and night. 

Dr. Rodriguez called a couple of days ago and told us the results of Samuel’s genetic testing. We had waited 8 painstaking weeks, and the moment he called, I was a wreck. Samuel has a defect in his 15th chromosome called Micro duplication chromosome 15q. 
His 15th chromosome duplicated itself in a mirror image, which caused the problems he has. I cannot begin to express the relief of knowing what happened to my baby. I cannot describe the sadness of knowing what this can cause in his life. But, so many do not have answers. We HAVE answers. We HAVE a team of doctors who work for the good of our son. We are fortunate and grateful.  We are to see the geneticist to discuss the specifics of his 15q, and Maggie will be compared to Samuel.  There are many types of duplications within the 15q category, so hopefully we’ll find out even more. With more answers, come more questions.  Isn’t life just that way sometimes? 
I will share a link about Sam’s chromosomal syndrome. It is rare, and so much is still unknown. For now, we know that his risk of seizure is very great and that it is most certainly the root of his issues, including the autism. So, thank the Lord that He knows patience is not my strong suit, and the EEG is this weekend. 

There has been much to take in during the past 4 months. I am ever-learning, ever-worrying, and ever-leaning on my God. The leaning keeps me on my feet. My patience is growing, and I am so glad He never lets me fall.

Generalization about micro duplication 15g:


Nothing, but net…

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The new year is upon us. 2015. 

Nearly 20 years ago, I walked the field at Pineville High School, collecting a diploma that would lead me to many life experiences. A diploma that would bring me to Louisiana Tech, to an education that would ensure my future.  
My college roomie texted me at midnight, and it dawned on me that the year 2015 will mark our 20th anniversary of being friends. Nearly 20 years ago, she walked into my dorm room and into my life, and she has been my forever friend since that frozen moment in time, Graham dorm room #305. 

Nearly 20 years ago, I said goodbye to Pineville, Louisiana as my home, and journeyed, often floundering in my faith and obedience to God’s plans for my life, a path that I could have never imagined. 
And, somehow, by the miracle that He is, I was always lovingly scooped up and put back where I belonged. He has protected me all of my life, but during those years at Tech, I see more now than ever, He especially harbored me from myself- my poor decisions, my thrown cautions to the wind, my lack of good judgement. He even brought me to a boy who loved this mixed up girl deeply- who never gave up on her, because he knew she was to be his bride.

2014 has been one of the most trying years of my life.  It has been host to much illness, anxiety, diagnoses, and therapy. It was never what any wife and mother would imagine for her children and family. It has been painful, filled with tears and sleepless nights. I have blogged it, talked it, questioned it, and dwelled on it, too. 

But, for every illness- a cure. For each moment of anxiety- a prayer. For all the diagnoses- information. For therapy- improvement. 

Just like in college, and throughout my life, He provided that ever-needed safety net. The one I willingly fall into when life seems too heavy a burden. The one I mistakenly crash into when I try to conquer alone the hurts of living. The net that holds me so securely, through my mistakes and weaknesses. It is impenetrable, and never failing.

And, I know when the ball drops at midnight in 2035, I will still be able to see His grace and mercy, as I look back on the 20 years that will have passed. 
And, I am certain that I will still have His word and love holding me firmly in that precious net that has always caught me.  

HAPPY NEW YEAR!

Runneth over…

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Today was Maggie’s school Christmas party and pj day! I made cute little goodie bags for the kids in her class and made these for her teachers. It was super easy, and they turned out so cute! I got this picture and idea from pinterest. 



The kids sang carols, danced, decorated cookies, drank hot chocolate, and exchanged gifts. I came to help as a room mama, and my mother watched Samuel for me, so that I could spend such precious time with my Maggie. She looked so cute and grown in her new pajamas, too! 

My poor mama finally made it home about 6 hours after she left. The rain and holiday traffic held her up. I am so appreciative that she came and stayed with us while Scott was traveling. I’m a big chicken, and I hate being home alone at night! Eeek! 

For the first time in these past few months, I am actually excited! I am going to see my family soon, and I am thrilled to have both of my kids home with me. No therapy, no school, just celebraring Christ’s birth, eating wonderful food, and having down time, all of which sounds fabulous. Scott even has a few days off from work, and I love when he is home with us. 

I have had such a sense of impending doom over the past months, that I don’t think I have thought ahead to how much happiness I experience during the holidays. CHRIST was born for ME!  He was born for each of us, and the promise of eternal life with Him when our earthly life is finished is available to everyone. 
It is the most miraculous gesture of love that could never be met by any deed on this earth. How beautiful is He!
This precious child, birthed by an amazing young woman, following God’s will. An amazing dad, obeying God’s plan for he and his bride’s life. A tiny manger holding the King of Kings, Emmanuel. 

Merry Christmas to all! 


I pray

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I am convinced that God is molding us as a family through all of this illness we have endured. This is our burden to bear. Every person has something that is heavy-laden, and this is ours, for these moments. But, I am praying that this bit of light in such a dark tunnel is the beginning of wellness. 
Samuel is still sick, but he seems in better spirits most of the day, and Maggie’s asthma is calmer today than in days past. Thank you, Lord. 

I talked to my friend, Charlene, this afternoon, and she knew my mind and heart were heavy. I told her that I feel burdened, like a weight is on my shoulders. It reminds me of the old roadrunner cartoons where Wylie Coyote ends up with an anvil crashing down on him, sending him plummeting over the edge of a cliff. Or, when his plan goes awry, and Acme dynamite explodes, burning his fur to the point of non-existence. He remains just a shell of his former self. 
The anvil is heavy, most certainly, and my shell is fragile, at best. 
My sweet Maggie is having a very hard time with Samuel’s autism- specifically, some of the behaviors he exhibits that affect her directly. In some ways this breaks my heart more so than Sam’s diagnosis. How do I protect her and her quivering soul right now? She is sad, confused, angry. She so desperately wanted a sibling, and her love for him amazes me. But, she has not gone unscathed. None of us have. 
She is such an intrigual part of this family- our first born baby. Our only child for 7.5 years, she has had to become a big sister, a sharer of her parents’ love and time, and a person with much empathy for her struggling brother. She is just a little girl. I think there are moments of remembrance, when things were easy.  Movie dates, zoo days, picnics- easy. No worrying that we will suddendly need to leave to cater to sweet Sam’s needs. She is grieving those days. Aren’t we all?  Isn’t that very human of us?  Isn’t that ok? 

I am praying for her continuously.  I find myself whispering breath prayers that her days at school are joyful, and that the boy in her class who calls her names leaves her alone. I pray that her heart stays young and innocent for as long as it can- for God to guard it and hold her steady in his hands. I pray for her teacher to be aware and loving of her individual needs. It is an ongoing conversion with Him. 
Maggie learned this verse tonight:
“Cast all your anxiety on Him because He cares for you.” 1 Peter 5:7. 
Such simple words that need no explanation. I hope that she will use this in her times of heartache. 
In the meantime, I pray. 

Let go

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It has been a rocky road in the Bland house. Sam has the flu, and tonight I had my own little 5 star visit to Memorial Hermann. I have a respiratory infection, a bronchial infection, and asthma. I got 3 breathing treatments and a boat load of medicine. I am so tired of not being able to breathe. 3 weeks is far longer than I had planned to be sick. Sam has been on Tamiflu since Thursday, and today he still has fever and sounds awful, but I think we are seeing some signs of improvement. Thank the Lord. 

Maggie, Sam, and I all had our flu shots, and my girl and I haven’t come down with it. Maggie has been on Tamiflu, as it would be really dangerous with her asthma to get the flu. 

My sick baby boy  😦

Me at my MOST attractive.  It kind of looks like a mug shot, huh? 

We were so excited for tomorrow, because Katy Mills Mall organized a sensory specialized time and place for kids like Samuel to see Santa without being overstimulated. We had an appointment, and we would not have to wait in hour long lines. And, although we can’t go this year, what a blessing this will be for other children with various health and disability issues. What a thoughtful thing to do. It is called Caring Santa. Our ticket

When I took Sam to the doctor Thursday, he had just started showing symptoms and wanted to get off my lap. He walked over to a stranger and began rubbing his head on her knee, just checking it all out. The mama was so sweet to him. I explained to her that he does that instead of using his hands when he comes in contact with anything and anybody new. 
I was immediately conscious of how most autistic children have no sense of “stranger danger.” It just worries Scott and me so much because he has no concept of the world out there, and he cannot communicate for help if he is hurt or scared. 
Thankfully, he is still so young, and I am always with him. I am scared to send him all day to an ABA therapy school when the new year comes. As a mother, my mind is constantly spinning with what ifs. 
What if he is not treated nicely, and he can’t tell me?
What if he is unhappy all day and can’t say it?
What if I didn’t make the right choice for him?
It is so consuming at times, that I just have to put my brain in numb mode. Easier said than done, for sure! 
I am dreading the day that I drop him off for the first time. But, I am going to have to trust my instincts, which means listening to God’s cues and guidance. It is so hard to give control to the one with the master plan. He does know best. He will protect my baby. He will wrap him in people who love him. I will remind myself of this every day until I can finally let go. 

Pieces

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Tonight, I lie here with a sick little boy and a precious little girl with pink eye. We are all in my bed, as Scott is so good to sleep in the guest bedroom tonight. He knows how much I worry about our kids. It is one of my many idiosyncrasies that he tolerates and accepts as me just being the Jannan that I am- the one he loves. I appreciate him and love him deeply.  

I hold Samuel in the crook of the left side of my body. That is his little niche, and it has always amazed me how both of my babies fit perfectly there, like the finishing piece to a puzzle. 
On a taxing day, like today, I love having my puzzle completed. It feels whole. It feels right.  I can see the details of tiny fingers and locks of curls. The picture is beautiful. 
Even when the day is long, frustrating, and exhausting, the weight of their little bodies and the sound of their slumbering breaths give me a sense that they are safe. And, there is a feeling of accomplishment- a day well-lived, mistakes and illness included. 
It’s as if God is saying, “You made it! I knew you would. Rest easy in Me tonight. Feel My presence and know that I will protect My children as they sleep.”

So, I am going to close my eyes and find comfort in knowing that tomorrow is a new day. It might be filled with fever,  runny noses, and doctor appointments. But, it is one more day that I am alive and am able to be with the people I treasure most. Thank you, Lord. 

Love

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I was talking to my Aunt Tamara tonight about being thankful for so many blessings we have seen and felt and experienced in the last few months. I told her that I couldn’t imagine how Scott and I could have made it without the support of my parents. I began to cry, overcome with gratitude- so filled with gratefulness for them that nothing I could ever do would be enough to repay their love. But, love is like that, isn’t it? 

My mother has told me many times that when you love someone unconditionally, there is no debt. There is nothing to repay. The only interest we owe is to love in return. 

That is how Christ feels about His love for us. He only asks that we love in return. There are no rules to loving genuinely, really. Just follow His lead, and it will resonate through you. Others will see it. But, most importantly, others will feel it. 
It is the most limitless of all resources. It promotes health, heals wounds, comforts the dying, brings joy to the sad. It has no boundaries, knows no race, cares nothing of past sins, and it does not discriminate among social and financial classes. It is a verb. It is something we do. It costs nothing, yet is the most priceless gift one can receive. And when we give it, we receive it ten fold. 
My parents’ love, alone, has been such a source of strength throughout my life, and today I am more thankful for it than ever. Happy Thanksgiving.   


Cleanse

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Hemingway is my favorite author. If I could teach a class on his works every day for a year, I would. I am particularly interested in his short stories. But, I am most definitely enamored with the man behind the words. His depression contributed to some of the most brilliant pieces of literature ever written. 
He once said: Write hard and clear about what hurts. 
And I wish I could respond with, “I feel your pain, Ernest.”

As I journey through this dense forest of life right now, I don’t feel particularly positive. In fact, most days I am completely unsure of over half of the decisions I must make. 

I do thank God each day for the many blessings he bestows, especially my forgiveness and eternal life through his Son’s sacrifice. I even praise him now, in and for this rough weather. I know that he is molding me and strengthening me through these trials. 

But, as Hemingway knew all too well, writing when the souls hurts makes the pain more bearable. I liken it to cleaning a wound. It can sear with pain, but once it has been tended, it will begin to heal. Covering the injury can cause it to fester.  The hurt will last longer, leaving deeper, more pronounced scars. 

I have found that writing perpetuates healing to my injured mind and heart.  I protect them, but leave them exposed to the possibilities and hope life can bring.  
And when the dawn breaks through my window, I can thank God for a new day. 

If only Hemingway had known  that he could be strong, too…